Wufflebear

Yea, it was hard to not say anything more but I find it rarely does much good...lol I can drive ok, Sometimes I have to put the seat a click or two back but usually that makes it do-able for me. I will be wiped tomorrow though (party is tonight). Luckily I will be able to sit and watch kids play tonight so it won't be overly stand-up-ish.

So sunday my hubs says " (he has a good cold or flu bug) I dont think I can go to the party (purim party) monday night becasue I feel too bad..I cant stand up for more than 10 minutes, I am hot and cold, My glands are swollen, I am dizzy, I cant concentrate on anything, all I can do is stare at stuff, I cant even sit up for very long before I feel terrible. If I do anything like read even for just 10 mintues I just feel awful and have to close my eyes and lay down." All I could say to him was "yep, Sounds awful". To myself " story of my life!" So I will drive the two hours to take my daughter to the party tonight.... I might buy sunglass cover thingies for my glasses though...I detest night driving... Ah well....just thought I would share...(-;

caffeine first thing works for me, or at least helps. I am in a perpetual fog some times. Keeping my feet UP helps too. Yea, it is amazing that some people choose to take something to make them feel stoned...Yuck. It takes me about an hour and a half or so for my body/mind to come together in the morning. I just cant function for a while after getting up...I have never really understood why...But I guess my ANS just wakes up after I do.

Thanks all for the great ideas...I will use them! I like the party game ideas janine!!!! What fun!!! heart races anyone? How low can you(r bp) go? (-;

I am sorry you are back in the potshole.... I hope it passes sooner rather than later!

How are you doing now?? Did you finally get any sleep??

Thats wonderful!! It is funny when I was a kid I often thought "i was not cut out for this world"...Guess I was right!!! I was cut out for a planet with less mass....lol

so I had a meeting scheduled at work at 11am. I sat there for 10 minutes feeling worse and worse, orthostatic kind of things, and no one even showed up. SOOOO I returned to my desk and I noticed as soon as I stood up my left knee went numb and my left arm really hurt. There is a spot on my left elbow..kind of where the bone of my elbow lays on the desk when typing that keeps sending a really sharp pain thru my arm..The rest of the time both arms, actually, just ache but the left one is worse. Everytime I get up my left knee goes numbish feeling. Very weird. Ideas?? I saw an article about fibromyalgia being dysautonomia too... at http://www.fmpartnership.org/Lavin%20article.htm All the pains I get make me wonder. If my co-workers only knew that 10 mintues of witing for them to show would send me into hours of pain and orthostatic junk. I may need another ice cream run soon.... (-; Then my mouth at least can be happy!

you guys are so sweet. Thank you! I wish we could all meet in person, wouldn't that be a kick. A whole room full of people who understand!

I have had that too. I thought it was just reaction to dairy as my mom and brother are lactose intolerant but then...other things cause it too...

SuperPersephone!!!! I am sorry you are having such a time....and yet another story to our potsy annals of bad docs and bad doc experiences. take it easy and we love ya!

I understand and I am so sorry that any of us have to go thru this (* from doctors. We need better doctors in this world!

Well I have reserved a room at a hotel that is ADJACENT to the hospital. I went to the hospitals web site and they offer discounted rates at nearby hotels so I got quite a nice one for 69.00. They have flexible checkin for hospital patients/visitors... They said it is also extendable if I need to stay more nights. I just can't put a five year old thru seeing me at my worst, it isn't fair to her... And could be scary for her. I am pretty good about sucking it up, but the more I do that when it is bad, the harder it is to recover....

It is on 04/06. I know I have to check in at the hospital before the test...but I dont konw if I am technicaly admitted or not. Unfortunately my dad is in portland (2 hours north of Eugene, where the test is being done) and I live two hours south/west of eugene....

I just listened. Very COOL!!!

I asked my dad to come down and be with me when I do my tilt table test and help me out afterwards. The test/hospital is two hours away from home, and I will have to get from the hospital to a hotel etc afterwards (check in, carry up luggage, find food..)...He said no. He thinks my husband and daughter (5 years old) should be there..... I don't want to scare my daughter and I really think afterwards, if I have a bad time during the tilt, that I won't be able to bare being jumped on and played with. I will just want to lay in the dark and go to sleep... Plus my husband is the 'shut up and deal with it' type....and I could be over my 'dealing with it' limit and won't want guff... I feel really let down, I thought my dad would do this for me.... I don't think my husband will and there is no other close family.... I'll figure it out, but I wanted to cry on some friends shoulders for a moment.

the catecholamine test should be done laying and then standing?? Just in case they are not sure...

Thanks for the reply. That is good to know... So much for my spidey sense lol

Thats a tough one. I rarely go...but sometimes I give in. I think it has more to do w/ my mental state. Sometimes when It goes on for just too long, or is new/long lasting or something that just wares me to a frazzle...then I go.. I think I am looking more assurances, and hopefully something to take the edge off. Most the time I hide in my room and hope it goes away...

Two things...Not at all related but anyway.. 1) I can taste IV's...docs always say I can't, but I can...Does anyone else get that??? 2) I get an intermittant buzzing/sizzling feeling/sound at the base of my skull in the back...It is really weird...it is not like it is coming from my ears, but I can kind of hear it. It is definately at the base of my skull or upper neck in the back. Very weird? Anyone else??? The only thing I can find on the web for a buzzing at the base of the skull is this link about that being spideys spidy sense and something about detecting UFO's...and I am petty sure those are not it..... lol

OK so last night I got out of the shower and went to go use a q-tip to clean my ears...Now normally I get dressed, sit down for a moment and then do the q-tip thing either sitting or leaning against the counter. For some reason I did not. AND suddenly got dizzy and lost my balance (did not fall over though) and managed to ram the q-tip into my ear. OUCH. I think my ear is ok, but it hurts. Then in the night it became Clear that I had my daughters cold....so I had that plus these hot, achy, tachy things and a few heart flip flops thru the night. got up to go to the bathroom around 1am and got the tunnel vision I think...problem was the room was pitch dark, so who knows.... i love my body, i love my body, i love my body Today my heart rate sitting w/ my feet up and my head/back reclined is clocking 110, stand up and I go to 125-130.....I am buzzing.....poor mans caffeine I guess. So I just broke down and took some childrens dimatap to clear my sinus's as they feel like they may just fall of my face soon.... so I will be entering high orbit soon....lol Look for me around pluto.... luckily it is super slow at work....

First off, welcome! I too have been sick since I was little. I have not had any luck w/ supplements or herbs etc.... Other than licorice root helps me feel soothed on bad/tachy days sometimes...it also happens to make my canker sores not hurt....

would this be a good time for them to do a catecholamines or would that be duplication of the plasma metanephrine or norepinephrine supine and at various levels of tilt or the 3,4-dihydroxyphenylglycol (DHPG) level tests??? whew... lol

Yes, I will totally ask for this??? Anything else I should ask for??? What is a parepres monitor?? Any other blood tests they could do during the tilt??

yes, I get the nose feeling too, minus the cold. Very weird. I have no idea what it is and my doc just looks at me when I mention it... So....I chuck it up to being dysautonomic in whatever flavor...